Bayefsky Michelle J
Bioethics. 2017 Mar;31(3):209-219. doi: 10.1111/bioe.12329. Epub 2016 Dec 28.
Since the human genome was decoded, great emphasis has been placed on the unique, personal nature of the genome, along with the benefits that personalized medicine can bring to individuals and the importance of safeguarding genetic privacy. As a result, an equally important aspect of the human genome - its common nature - has been underappreciated and underrepresented in the ethics literature and policy dialogue surrounding genetics and genomics. This article will argue that, just as the personal nature of the genome has been used to reinforce individual rights and justify important privacy protections, so too the common nature of the genome can be employed to support protections of the genome at a population level and policies designed to promote the public's wellbeing. In order for public health officials to have the authority to develop genetics policies for the sake of the public good, the genome must have not only a common, but also a public, dimension. This article contends that DNA carries a public dimension through the use of two conceptual frameworks: the common heritage (CH) framework and the common resource (CR) framework. Both frameworks establish a public interest in the human genome, but the CH framework can be used to justify policies aimed at preserving and protecting the genome, while the CR framework can be employed to justify policies for utilizing the genome for the public benefit. A variety of possible policy implications are discussed, with special attention paid to the use of large-scale genomics databases for public health research.
自人类基因组被解码以来,人们一直高度重视基因组独特的个体性质,以及个性化医疗能给个人带来的益处和保护基因隐私的重要性。结果,人类基因组同样重要的一个方面——其共性——在围绕遗传学和基因组学的伦理文献及政策对话中未得到充分重视和体现。本文将论证,正如基因组的个体性质被用来强化个人权利并为重要的隐私保护提供正当理由一样,基因组的共性也可用于支持在群体层面保护基因组以及旨在促进公众福祉的政策。为了让公共卫生官员有权出于公共利益制定遗传学政策,基因组不仅必须具有共性,还必须具有公共性。本文认为,DNA通过使用两个概念框架具有公共性维度:共同遗产(CH)框架和共同资源(CR)框架。这两个框架都确立了对人类基因组的公共利益,但CH框架可用于为旨在保护和保存基因组的政策提供正当理由,而CR框架可用于为利用基因组造福公众的政策提供正当理由。文中讨论了各种可能的政策影响,特别关注大规模基因组数据库在公共卫生研究中的使用。